Hi Nicola.

It seems I am in a similar boat to you, I delayed going to the gp for a month as I have had tonsiliis a lot so tried all the thing I normally do, then the gp tried strong anti biotics but as soon as I knew they were not working I went back.

As I said to her a sore throat should not last for 6 weeks so within 2 weeks I had an ENT appointment.

Things moved fairly fast then, they booked me into a onestop clinic for neck lumps(idea was to be seeen by everyone in one visit and be told what was wrong on the day) but also a ct and surgery to put a camera down and take samples. by the time i went to the clinic i had already had the ct scan (the day before) and a date for surgery(biopsy) I was only in the clinic a few min as they told me about the mass on the ct and needed the samples and MRI to know more. at no time has anyone told me in the way your gp has, it seems bad untill the have formulated a plan as it seems to me not all are the same. I am ecpecting a combination of chemo r/t and surgery.

I have only told one other person apart from my wife as timings are not good and untill I have answers it will just be harder. 

Seems like a heavy burdon at the moment.

Ken.

Hi all how are we all doing?

sorry not been around but it's been crazy at work

welcome aboard all you new peeps I know you prefer not to be here but this is a great place to be if you are in our club

mutant of which you are not I had throat cancer I got away with not having surgery and am now 7 months post treatment and very much on the mend although I have still got a way to go to get back to what I was

i diarised my experience on my blog page so it might give you some idea about what you are about to go through gammaraygary.wordpress.com/about/

so what's doing all looking forward to meeting you all in AprilApril

Leo

i remember your thread well

dont feel so guilty, you have done your time in this process ..... now is the time to enjoy what you have

as you were so close, yes it's a shame you did not pop in and see us

next time I hope

vatch

Meetup looks good,

Next time I will come, keep saying it but will. I remember this thread and Nicola more than two years ago. It helped a lot so I want to thank you/everyone in person.

Good to see so many doing well.

Hi Irene

I remember when I was going through my journey I always loved seeing people getting successfully to the end of theirs - and now here I am myself...:cool: Gutted that I posted a little too late for the get together but hopefully I can be there for the next one in Edinburgh!

Take care and hope you are doing well!

Leo

Hi Nicola

You will get there too!

Its not the cancer itself that was the worst part for me, it was the idea that I'd just be a distant memory or someone the kids didn't remember - a picture on a photo. The thought of not seeing them grow up and not being able to be their Dad when they needed me (which is a natural thing to consider) was both scary and inspiring. After the inial shock I was resolved that nothing was going to stop me being around for them!

Take care

Leo

Hey Vatch

Thanks for the reply - massive respect for all the support you offer to so many people on the site.

Defintiely hope to see you all next time in Edinbugh.

All the best

Leo

Leo

thanks, and I hope all is well with you

shame we did not pick up in Liverpool, but hope to see you in edinburgh

vatch

Hi All

i thought I'd have a look to see if anyone was on here and it was great to read that you are all getting on so well.

fab news about Leo reaching the 5 year mark. We were both supported by the lovely Access at that time and I still think of him often.

i too am doing well. Still struggle with cheese rolls or chip sandwiches (so classy!) but apart from that, life is great!

i will keep checking on here to see how everyone is and I will have a look at the other threads to see if I can support others as I know how much it helps.

take care all.

debbie

xx

Cheers Debbie, I've just replied on the other thread.  Great to hear you are keeping well too.  Hopefully you'll join one of our get-togethers? Love Irene x

I love to hear good news, it gives me hope too! I've passed the 3 years now but still on 3 monthly check ups, but to be honest that makes me feel safer.

If any of you live in Kent and fancy a chat maybe we could have a south east meet sometime, I'd really love that.

Keep well everybody

love Carol x

Hi Deb, and all glad to hear we are all well

beb I have turned to wraps as sandwiches even with thin sliced bread is just too clogged up for me .... and I loved a cheese and pickled onion sandwich

unfortunately picked onion are just too tart for me, but I have found gherkins ...yippe .... slice them up and stick them in the wrap ..... with loads of other stuff too

glad to hear we are all well though

vatch

Hi Deb, and all glad to hear we are all well

beb I have turned to wraps as sandwiches even with thin sliced bread is just too clogged up for me .... and I loved a cheese and pickled onion sandwich

unfortunately picked onion are just too tart for me, but I have found gherkins ...yippe .... slice them up and stick them in the wrap ..... with loads of other stuff too

glad to hear we are all well though

vatch

Hi all, I just had my 10 year check - they don't want to see me again. Did anyone have their soft pallet removed with their Op? I cannot swallow at all and wondered if this was the reason. I can only sip drinks and have to tip my head back so the liquid runs down my throat. I lost about 60% of my tongue and cannot manoeuvre food in my mouth. Food aside, all else is great. I am 81 next week and life is good.

Colin

Well done Colin thats a milestone we would all like to get to, you give us all hope for the future. I have lost a third of my tongue plush left with a very painful neck resection but that's all thank the lord. Not having a soft pallet must be so difficult. I know what you mean about food, I find any food difficult to turn in my mouth. I choke a lot if I am not really careful with the type of food and can only have small spoon falls . I also have a lot of problems with the food falling under my tongue and getting stuck! Most annoying !

So so please with your news, keep well

Regards Carol

Hi'

A little off subject but :

I had my tongue Op. ten years ago and have MICKEY PORT PEG fitted since then so I can inject nutrician directly.. (A drip)

Has anyone else had similar?,  I have always had a small discharge of mucus which I clean with alcohol

and then Bettadine (Iodine). I wonder if this is normal. I have had no problems with this. My French doctor gave

me an anti-biotic which did not cure it.

Colin

Hi Colin

i had the same during and a year after treatment. I had several infections of mucus coming out of the area. I had antibiotics a few times and eventually it cleared up. I'm trying to remember the name?????? They were strong from the penacillin family. 

I think it's so easy to get infections there, all you can do is clean with alcohol every day.  I kept mine cover with loose gauze as well to avoid contamination.

take care

Carol x

Hi

i hope you get a negative result but if you do have to have the lump removed then it will depend on the size and which part of the tongue it is in. My lump was 9mm on the middle to right hand side of my tongue. The only problems I have is lisping if I talk a lot, otherwise my speach is fine. 

Good luck with your results etc and please come back to us with your progress so that you have some support.

kind regards

Carol

Hi

I had 19’ by 15’ mil cancer removed from the middle right side of my tongue 18 months ago.  I had a speech therapist assigned to me but I think within six months she signed me off!  It hadn’t spread so I didn’t need any further treatment so I was back in work within three months, I did have a lisp (and was concerned about spitting ) but you learn to adapt.  Lisp isn’t as bad now, I avoid some words but has got better quite quickly.

I am a now 43, never smoked, but do like a few glasses of red.  Keep in touch and let us know how you are getting on. 

xx

Hi I’m a talking therapist and losing my Tongue was a huge fear. My op was 4 weeks ago. Speech amazingly good and Evertyone can understand me. Also doing my tongue exercises. I promise you’ll be fine and you wil adapt and others will also adapt around you. Best of luck Paul